April 15, 2016

You, Me, and the Apocalypse.

See that vision in leather, fake balloon boobs, and spandex with hair extensions? Her name (and it’s not her stage name apparently) is Amber Marchese. She is one of Bravo’s “Real Housewives” of New Jersey which except for The Real Housewives of Orange County is the most absurdly cartoonish of the franchise.  Anyway, People Magazine has made this woman a voice and face of breast cancer.

Now I feel under-dressed I should wear my good leather to chemotherapy.

You think you are flying to London landing at Heathrow but you end up on Mars.  This is how it felt after I received my 2013 diagnosis.  

Friends you have been understanding but in a culture focused on survivorship those with
metastatic breast cancer can feel isolated.

I have a very no-nonsense way of educating people about metastatic breast cancer.  Someone will ask, when are you finished with treatment and I’ll tell them, when I’m dead. So many people interpret survivorship as a given. Doesn't everybody survive cancer?  No, not everybody survives cancer.

An estimated 155,000-plus women (and men) in the U.S. currently live with “mets,” stage 4 breast cancer that has metastasized, or traveled, through the bloodstream to create tumors in the liver, lungs, brain, bones and/or other parts of the body. While treatable, metastatic breast cancer (MBC) is incurable, between 20 and 30 percent of women with early stage breast cancer go on to develop MBC. Median survival is three years; annually, the disease takes 40,000 lives.

As with primary breast cancer, treatment for mets can often be harsh and unforgiving.  But dealing with an incurable illness and the side effects of its treatment aren't the only burden MBC patients have to bear. Many also have to educate others about their disease, explaining repeatedly that no, the scans and blood tests and treatments will never end. No, the metastasized breast cancer in their lungs is neither lung cancer nor linked to smoking. No, staying positive and “just fighting hard” isn't going to beat back their late-stage disease.

Sadly, people don’t “get” mets. In fact, a recent survey sponsored by Pfizer Oncology shows just how misunderstood it is. Sixty percent of the 2,000 people surveyed knew little to nothing about MBC while 72 percent believed advanced breast cancer was curable as long as it was diagnosed early. Even more disheartening, a full 50 percent thought breast cancer progressed because patients either didn't take the right treatment or the right preventive measures.

I feel like I’m on a merry-go-round and I keep waiting for it to stop. I have lost a lot of acquaintances and feel bad about that. But it’s like musical chairs. I keep wondering when I am going to miss that chair. 

So far, I've been “lucky”.


Anja said...


‘lil bro said...

Your horoscope via the downtrodden and disenchanted-
Not only will romance, adventure, and thrills refuse to come to you, they will also refuse to come to theaters near you.
Mit luff und dewotion, always…

Ms. Edna (squared) said...

thanks a bunch